Finances

Families of children with hemiplegia may experience financial challenges. Some of these challenges include: no or inadequate insurance coverage, insurance coverage with high co-pays and deductibles, not qualifying for government assistance because they make just a little too much money, limited number of therapy visits, loss of income due to therapy and doctor visits, and loss of income when one parent stays home to care for their child. The information provided below will help you explore insurance and government benefit options. Your child may also benefit from a special needs trust which may allow your child to qualify for special benefits and programs while still maintaining a good quality of life. Many programs have long waiting lists, so sign your child up for the program as soon as possible.

Special Hospitals

Texas Scottish Rite Hospital – Texas Scottish Rite Hospital for Children provides care for orthopedic patients who may have related neurological disorders and neuromuscular diseases. Because a physical orthopedic condition can be related to another condition or underlying disorder, TSRHC offers other medical services to its orthopedic patients. Visits, procedures, surgeries, orthotics, and other medical needs often provided at no cost and not usually based on income.

Government Programs

Medicaid Waiver Program – federal information on the Medicaid waiver program. This program is NOT based on parent income. It is based on the child’s income and many children with hemiplegic cerebral palsy will qualify. These programs may pay for special therapies, medical co-pays and medication, transportation to medical visits, attendant care, respite, home adaptations, and a variety of services your child with hemiplegia may need. Some states have very long waiting lists, so even if you do not believe your child currently needs services, we recommend that you add their name to the waiting list and evaluate your child’s situation when they become eligible for the program. Sometimes it’s difficult to even find the page that explains how to apply for this program. To find your state’s program, search for: Medicaid Waiver and the name of your state.

Planning for the Future for Children with Disabilties

A major concern for families of children with hemiplegia is how to best fund the child’s long-term personal and financial needs in a manner that will provide them with a fulfilling lifestyle.

Some families choose to set up a “Special Needs Trust.”

In December 2014, the President of the United States signed the Tax Extenders package, making the ABLE Act an official law. Each state is responsible for establishing and operating an ABLE program and states should begin to accept applications to establish ABLE accounts soon.

Other Resources for Families of Children with Hemiplegia

General

UnitedHealthcare Children’s Foundation – provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their family’s commercial health insurance plan

The Lindsay Foundation – assists families with the resources necessary to provide medical treatment, therapies, and rehabilitative equipment in order to improve the quality of life for their special-needs children

Believe In Tomorrow Children’s Foundation – provides exceptional hospital and respite housing services to critically ill children and their families. We believe in keeping families together during a child’s medical crisis